Wednesday, October 28, 2009
Julia had another Dr appt this past monday, with the nephrologist (kidney) Dr, as she has 2-3 kidney infections this spring, and into June before we got her. At least that wasn't a medical surprise. The Dr was so nice, she ordered a renal ultrasound and another test called a VCUG to check for urinary reflux, good appt, Julia will see her again in January. Julias behavior was horrendous that day. Even though she is medicated, her mood swings were unreal, emotions all over. On the way in to the hospital, intermiitant yelling, crying, laughing, banging her head into the back of the car seat repeatedly. Maybe it was becasue of rush hr traffic, I felt like that once in a while while driving in. Here, a 25 mile car trip to ChildrensHosp-Boston, can take nearly 2 hrs, after rush hr I have made it home in about 35-40 mins. I am calling the Pediatrician in a little while, Matt has been sick for almost a week. He was tired last Weds, vomited at 4 am thurs morning, high temp, came down with tylenol, comlained of being tired, intermittant fever, no appetite, pushing him to drink, friday kids didn't have school so didn't count for him missing school. Saturday, he was complaing of a sore throat, cough, cold symptoms, tired. Sunday, he said he felt good, just a cough and runny nose. Felt lousy again yesterday, no school, fever last night same cold stuff and tired, no school again today. He had a 7 yr checkup last fri, and the Dr listned to his lungs, clear then, but that was 5 days ago. Better safe than sorry, and he has a cardiac history as well. The girls don't show any symptoms. Flu or hope not H1N1. My nephew had this recently out in Montana at college, sounded like Matt. Oh yeah, Julia said "eat" 2 days ago, she probably got a good whiff of the bakery-sandwhich shop in the hospital lobby, little food obsessor that she is. She also says "og" (dog) "aw dah" (all done), just learned the sign for yes. Not bad for a child that came from nothing just about 3 monthes ago.
Wednesday, October 21, 2009
Jlia was aweful quiet for a few mins, and found a big blowout in her pull up. Julia has school tutoring this afternoon, she gets so excited, loves the SPED teacher, will continue until school starts. Mat is doing well in school, went on the bus with his aide on the class trip across town t a colonial house, has a blacksmith shop, crat area, and a barn on the grounds, historical structes depicting colonial time. I volunteered, the kids loved it! When the trip was nearly over, a few of the kids wanted to take pics with, Matt, and the girls in his group wanted a pic with him, he's is quite a ham, nice he is making new friends, since he changed schools. Julia saw the liver Dr this morning, she was so nice. We talked a while about Hep C,and how she thinks Julia may have gotten it. We know the LFTS liver function tests) are elevated, but not too bad yet, had blood work drawn for the genotype of the HCV, to see what med route we ave to take. Dr felt that we can talk more about meds in Jan, after the dust has settled a little more regarding the T&A, and getting her teeth cleaned, extracted, cavities filled, etc. Also had labs done for HIV and syphlis, call the Dr back in a week. Julias lab for a gene,tic anemia disorder, came up on blood work from Sept, since she had mild anemia which was treated by iron supplements, put a call into the Pedi, see what he thinks. Today, while at childrens hosp, soedays they give me a paper with an appt on it, but today they called it "Julias Itinarary" Guess it goews to show how many appts she has coming up. Tomorrow, she and Matt are going to opthamology, he for a return visit, and she a new patient. Have to remmind myself to have the eye Dr chak way back in Julias eyes at the retina, guess Hep c can cause damage to the retna. Geez, almost time to get Matt at school, and get Julia ready to go for her afternoon of schooling.Keep praying for Frank to get a job.
Julia got her new othoticsfor her feet this month, what a differance! She wants to run all the time, and has also learned how to jump. She also picks up spped that she loses her balance and takes alot of spills. We have to be real careful of there is any blood from these wipe outs, scrapes, bloodly lips, loose teeth, etc. Ashley has been to the dentist, and will most likely need braces when she is older. She is having some probs at school with math, and will have another chat with the teacher, which is ok. We really like the rescource room SPED teacher. She and I went to the Boston Garden last saturday with a great friend, her 2 sons, and some other great friends,to see Ringling Brothers and Barnum and Bailey Circus, we all had a ball. My friend got tickets, and asked if Ashley would like a break from her 2 younger siblings, so she and I went. I was able to get my hair done that morning, thats always a plus. Last Weds, we had Julias IEP meeting. Originally, the plan was put her in PT kindy, go in the morning to the Early Childhood Center, since there would be only 2 kids in that room in the morning, wouldn't be as crazy, as Julia can get easily over stimulated, nosy, scattered, annoyed and her attention well, somedays are a tiny bit better than others. So after all was said and done, the district SPED person called the following day, and said "before you say anything, hear me out..." I thought to myself, oh no, what's going on now. Se than tells me, that after hearing all the reports, talking with staff and me, she is going to ask the head of SPED if Julia can go to pre school for a year. I'm not getting my hopes up sicne she is nearly 7, but it is the BEST place for her to be, in the town integrated pre school. She is a nearly 7 yr old "toddler", same size and mentality. Hope to hear real soon about that.
Monday, October 5, 2009
Blood work to rule out a false poitive for Hep c, was not to be. Julia does indeed have Hep C. Last week it really bothered me, and was just playing back what the Dr said. She has had so much to deal with in her little life of nearly 7 yrs and now this BS. I had a long chat with the International Adoption Dr last week, about the antipsychotic med Julia is on, and the liver issue, that's ok since it's a low dose. We are re doing the HIV and Syphlis test as well considering the circumstances, despite her records say it's negative, too unreliable. it's in that Dr's mailbox, a few consents are needed. this will be done when her T&A is done Nov 6. We also have to think when her rotten teeth will be taken care of and correlate with the T&A. Not sure since both are major oral procedures, or if they will be done at the same time. We have also put home, friends, family, school precautions into place regarding Hep c, i would be distraught if someone got it from her, from something as simple as a scrape, tooth coming out, things we really take for granted, and just a parent using bare hand to clean up any blood, NOT! In a carry around bag we now have gloves, gauze, and bandaides, better be safe than sorry. On a better note, Julias IEP meeting for kindergarten is Oct 14. No way she is ready for kindergarten, so she will most likely spend all her school days in the Early Childhood center. Maybe for circle, story time, about it. Had her Orthotics casted last week, little ladybugs design on them. She has recently learned to jump. I swear last week, she said "I love you", but she sounded like Scooby Doo, but I could understand her. she is now responding to commands in English, we say goodbye in Russian, and her eyes fill up, and she could start to cry. She loves to be on the go, even if it's just across town. She has an eye appt Oct 22, not sure what her deal is with vision, she has beautiful dark brown eyes, but can walk right into any object, even if it;s directly in her path she has walked into walls, chairs, side of the van parked in the driveway and acts surprised it's there, in the bathroom walked into the side of the toilet, vanity, etc. Not sure if it's a brain-eye connection, maybe nothing, chalk it up to the 6 yr toddler she is. Other than the bothersome, upsetting diagnosis of Hep C for Julia, and Frank being laid off from his jon since end of Aug, life is good, and we thank God for all we have. We tend to look at things as half full, not half empty, like the glass of wine I'm having right now, half full. Ashley and Matt are doing so well, we're so proud of them. Frank has an interview tomorrow for a job, pray he gets this. I'm going to start looking for a job too, about time I start thinking about going back, per diem anyway, can't say what Julias liver/hep C appts will be, hope few and far in between, unpredicatable. Life is good, even with obstacles, and being on the road to Holland, some know this.Would really like some Borsch, Ukrainian soup, so good.